Diary: State obligated trash fire

I didn’t know where I had left off so I read my previous posts and Jesus fucking Christ. Knowing what I know now I just sound tragically naïve and this just started a handful of months ago.. I trusted auntie L when I knew I shouldn’t because I felt like a burden, guilty and ashamed because no matter how much success with IHSS and Social Security I was still pensive and auntie complained about how I couldn’t let myself be happy and I was constantly asking her if I could do something to help and she scolded me for not trusting her despite the fact that she was the only family member I had that didn’t abandon me. Gas lighting is a bitch.

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Funny fact: in places like England they refer to flashlights as torches because you’re a failure and the only reason Jesus died for your sins is because it was a package deal

I was wary about auntie L when she kept insisting that we not pursue IHSS despite my insistence that we have to do something because I didn’t want anyone else to get hurt. Now that I look back I realize it was the door lock that was the final straw and I hadn’t even thought to mention it in this blog so I wouldn’t have realized it unless I was writing this blog. Goes to show how ridiculous this is because obviously I’m always making the right decisions.

My front door has always been kind of crooked so sometimes it sticks or will only accept keys when it damn well feels like it. We finally had it so everyone had working keys except for auntie. Every time I had given her keys to the house in the past she said she lost them and asked for another set. The last time she told me not to bother because she would just lose them anyway. It didn’t make sense to me which she would suddenly become apathetic to it now that I was living alone and needed people to be able to get in by themselves.

Auntie was at my house and overheard me saying that I was going to get a new door handle. She was very against the idea; what I needed to do was get one of those handles with the digital keypads.

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[Obligatory Doctor Who is on first joke]
I immediately turned that idea down and she got frustrated saying that the digital version is the one I needed so she would just get that one for me anyway. I told her no, I wanted to look online to see the brands. I had no intention of agreeing on it but while she was lecturing me I thought it would be interesting to see what they look like so I already planned on doing that.

My secret power about not lying when people asked me if I’m going to try something is that I contemplate everything. Do grapes taste the same to humans as they do to turtles? You asked me if I plan on looking into that my answer will always be absolutely.

 

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Only five posts in and this is the second Ninja Turtle reference
#90s kids who are capable of appreciating things because they were born in the 80s

First thing the next morning auntie came to my house with a brand-new door handle with a touchpad so people had to use a pre-determined code.

Everyone would have to learn a code to get in and the people that didn’t need to get in wouldn’t get in. It was even capable of storing multiple codes so each person could have a different code which would be “kind of cool.”

mission-impossibleZari exchanged looks of “no fucking way” when she leaned down to pick more out of the box. I thanked auntie and because I would’ve felt guilty that she had wasted money I agreed to use it.

Later.

It was sitting on the kitchen side board for over a week. Auntie began to become snarky toward me and every time I was in the kitchen and saw that thing I would feel sick to my stomach and I didn’t know why. That’s when I knew there was something going on that I didn’t know about and I had to get the toxic thing out of the house.  Thank God I’m pagan.

tumblr_o4gfkzLUjO1qdewlro1_500_zpsszhpba5dSavage and I had become incredibly close friends rather quickly and she has an even more incredible ability to judge people. She can suss you out at first glance. She is a better looking Sherlock Holmes. Every time I took her advice she was right.

 

My decisions were hit or miss.

So…

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Mom’s home.

She returned home with a few of her trinkets wearing clothing that didn’t fit her because it didn’t belong to her.

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Auntie had been texting Zari asking how mom was an Zari keeps telling her she is “fine.” Last week when Zari got here Auntie pulled up in a way that indicated she had been parked and was waiting for her arrival. Auntie called out the window, “how’s [mom]?” To which Zari replied, “fine” and continued walking up the pathway toward my door. Auntie sped away.

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I suicidal tendencies

Auntie got back into town after the sudden miracle of getting mom to stay exactly 2 weeks which were the two weeks she was invited out of state on vacation whereas days before she had said mom had to get home immediately. By the time she came back I had already gotten replacements of all mom medical cards and was almost done setting up her banking so I could adult all over her ass if she came for me. I had an appointments scheduled for myself on a Monday and Tuesday to finish taking care of her Social Security and get my license to leave the city.

Because, and let’s not forget this, for me to use public transport which requires wheelchair access I was on a waiting list for three months to go in for an interview to be judged whether or not I was disabled enough to be allowed to be on the only public transportation available to me. You know that joke that immigrants in America have to keep their papers with them whenever they go out? Same for disabled people.

 

That night auntie texted Zari and asked for blog is number and Zari told her that it wasn’t her place to give it but she would ask Savage if she would like her to have her phone number.

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I got a text from Savage that said “LMAO” with a lot of emoticons

Zari got back a text that said “tell her no.”

Auntie was furious. She started texting Zari things like “if it wouldn’t be too much trouble” which is exactly the thing she railed on me for doing that started this fucking shit.

Zari was nervous, though, because she didn’t want auntie thinking it was her that went to the home to dig up information about her.

Which is what Savage did the day before.

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Shout out to Nora Slatkin

We knew it would only be about 24 hours before she found out. Savage went to the home and said that she was mom’s caregiver (true) and that the family had sent her to pick up the rest of mom’s things (true) and when they said that auntie is the only one to get her things no she acted annoyed and asked, “If they didn’t want me here then why would she send me here?” Also not a lie just misleading. “Do you really think I bother coming if I didn’t have to?” Also not a lie. At first they didn’t tell her anything but then when she called them on a lie about how the laundry room is managed they asked and she confessed that she had worked in facilities like that before. After that they started talking to her enough for her to weasel out some information.

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You can see the exact moment she hears herself

Savage shocked my white world. She said that she approached staff that spoke Spanish, giving them some fake question to answer, and she only speaks to them back in Spanish so they think she might not be comfortable speaking in English and they immediately become her friend. All the people that only speak English also notice this and start to suspect they’re being talked about which helps course the person into giving her information she shouldn’t.

That superpower is a whole lot cooler than mine.

The staff Savage talked to said auntie took everything mom had except for some clothing that was in the laundry (since she showed up on the spur of the moment because she wanted to deliver her before I could get to any appointments.) Savage said that the CNA personally saw her put the bag of mom’s things into her car before she left. They hadn’t had any of her clothes at the time because it was a laundry day and everything was out.

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Savage relented on her “no contact” policy for auntie for Zari and because of a similar personality trait, she didn’t want anyone to take the blame for her victorious counterattacks. She wanted all the credit. Zari gave auntie her number and as I was reading the text later I nearly felt bad for auntie because she said the exact things that piss Savage off the most, thinking she was flattering her.

Auntie emphatically thanked her for everything she’s done, she asked how mom was doing and auntie herself was helping bu she just found out I changed my mother’s doctors appointment without notifying her despite the fact that I knew she was taking mom and it was hard with me constantly “changing things.”

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“I will eat your babies, bitch.” – A wise woman

See what had happened was auntie brought mom home and I caught her telling Zari that she needed to go the doctor so I asked for information and auntie didn’t look me in the eye and muttered something about how she needs her prescriptions reissued and that she would make an appointment. I cheerfully and very loudly thanked her but said I would do it.

 

She said, “that’s okay, I don’t mind.”

And I said, “thank you but no, don’t worry about it.”

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Auntie had tried to cancel mom’s Alzheimer’s medication because she thought mom would be better off if she was on psychotic medication yet to be determined. So, yeah. I changed that shit.

 

Savage texted her back thanking her for the compliments, telling her that mom was “fine”  (I told her that was the word Zari kept using) and she ended the reply by saying she was happy to help me because I needed someone I could depend on and that she tells me all the time I should stop thanking her so much.

brace for impactShe asked if I thought auntie would get it, the dig about saying “thank auntie” and thought that she hadn’t because she hadn’t texted her back in a few hours but I told her that auntie is flaky even with her drama and we would find out within 48 hours.

48 hours later auntie texted his:

 

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This is what has always bugged me about her, in an attempt to be sarcastic she uses this kiddie voice like she’s auditioning to be a playboy bunny.

I asked literally everyone that they suggested I do. Seriously, I even asked the relief society president at mom’s church. Her rejection was so well-crafted that I had to admire it. Everyone said it different but they all said that they had no idea what to do because it was impossible to make auntie happy and this drama was getting old so could I please not ask them for any more advice. Even May’s mom. And she always has an opinion about everything. No shade, so do I.

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Slowly but surely more things came to light…

Zari wasn’t getting her timecards and therefore not getting paid. We had also yet to have gotten any timesheets for mom now that she was back home she was in IHSS again. Everyone Zari called told her to call my social worker. My social worker refused to speak with anyone but auntie.

Last week when Zari was over my social worker finally picked up. There is a lot of other issues I’ve been needing to speak with my social worker about but Zari was only asking about payroll to which the social worker told her to call payroll.

Zari is a classic white woman trope that demand to speak to the manager, she’ll kill herself if it means she will get an apology from someone of authority.

I emphatically asked Zari to have her call me and she did. 15 minutes later, which apparently wasn’t enough time for her to calm down, the social worker called and she was incredibly annoyed launching right into Zari’s refusal to call payroll and she just talked over me with increasing volume. She had enough adrenaline for a Tokyo shift. Thinking back I just kept saying “I” over and over.

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“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”
― C.S. Lewis

Pretty selfish of me.

Finally she had finished talking and tried to get off the phone by saying she had taken care of it all (Zari’s timesheets) and so I put on that mask.

Thank you so much

I’m sorry for any trouble

your job was so hard so I completely understand

I don’t know anything that’s going on so please talk to me really slowly because I’m really fucking stupid

BTW, why didn’t you call me back if you are my social worker? What documents do you have stating that auntie was my guardian and would you like to see my competency papers? It’s no trouble at all, I can fax them immediately

I should be thankful to you for going above and beyond by sending an email

And that’s when she told me the guy who initially came to my house from IHSS, the one that had me paying the first caretaker out of my own pocket, never filed any of the paperwork I had done. Auntie had called and told them what to put down. This goes without saying but that’s a hate crime, bro. I know auntie had told everyone at Golden Living my her tragic story and every time he had spoken to anyone there they had pointed out the fact that I was disabled and should be thankful.

I swear to God, the words were “you should be thankful.”

I asked my social worker how much information someone had to present to IHSS to get full authority despite my legal competency. Was it just my name and birthday? How strict were these policies exactly.

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Kofi scratching his ass with that expression just cracks me up for some reason

You’ve got to give it to her, she lasted longer than most social workers before taping out. Of course she didn’t admit any wrongdoing on her part, she still insisted she went above and beyond for fixing Zari’s timecards but things could’ve been handled better it was just that she had been burnt so many times. She always put herself out there for her clients, everyone has always talked about how charitable she is.

Wait a minute, you are social worker who’s been jaded by giving her life away to work in a corrupt system just to help the less fortunate?

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I put my mask back on and since she has the depth of a child she went for the vanishing salt.

You know what? We are both just frustrated and we’re defensive because we’ve been through this horrible system for so long. Let’s put everything aside and move forward. We’re in this together.

She immediately started speaking with me as if we were friends and said that dealing with people “that won’t help themselves” and then she gave me a few anecdotes which I’m pretty definitely sure is illegal.

That didn’t bear much more fruit but she did say that she thought it was strange auntie had been acting weirdly the last couple weeks.

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Metaphors.

There is some budding fruit: I convinced her to remove auntie from my contacts. Doesn’t mean she actually did it or that it will actually work.

But apparently you can stroll into the social services department with the two peace and a biscuit and they will give you access to anyone’s autonomy.

A few days ago I got a notice of action that said mom would be losing Medi-Cal because of… Hello if I know. It was only identified by serial number so I have no idea.

After calling and dealing with all that we I out from Medi-Cal that Golden Living put in a claim they should have been receiving mom’s SSI instead of moi.

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Medi-Cal was super nice, you just have to wait on the phone for a lunar year. They looked it up and said I could throw away the letter, it had been sent out when they made the claim which was reviewed and rejected. I can only hope that wasn’t just a lie to get off the phone which happens a lot which is why you have to call multiple times which is why they get frustrated and lie to you in the first place.

What I can’t understand is… Why? Obviously the claim was over a laughable amount of money, just a few hundred, so why would they bother? The only thing I can think is that one of the friends auntie made in there did it for but that is…

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Diary: My entire family disowned me

I admit that I am insufferable at best. I’m guarded, I’m suspicious, I’m untrusting, I’m anal, I’m condescending, I’m pretentious, I’m hyperbolic, I’m pretentious enough to say I’m hyperbolic, I’m prideful, I’m petty, I’m unforgiving, I’m relentless, I’m impulsive, I’m too analytical but also too eccentric, I easily disregard people I don’t like, I’m manipulative, I have no mercy,  I’m independent, I’m a burden, I’m everything you could hate.

 

2017, huh? Sucks.

My first post on this blog was my birthday this year and I did my best to do a quick summary of how I got to where I was at that point. Like simple mall map instructions to which level in Dante’s Inferno I’m in. Well, things went from bad to worse to FUCK so read the back story here and get a load of this shit… And remember this was all in the last four months.

Stephanie Woodward arrested at ADAPT protest against cutting healthcare
Donate to @NationalADAPT to help pay for legal fees  gofundme.com/u2jc4-adapt

TBH, I’m exhausted and would rather not write this but after the ADAPT protests began last week I remembered why I bother to write about this anyway, a lot of disabled people don’t and the ones that do get ignored so the least I can do is help elevate the general comprehension of how disabled people live their lives. I don’t have to do a good job, I just need by making the good disability blocks have to do less work. If people like myself shared what it was like for us there wouldn’t be as much work to be done to gain civil rights.

This is a premature digression but I had a phone conversation today that I think encapsulates all of what I’ll be writing about so you could just stop here if you want to.

  • I called Verizon to cancel my cell phone.
  • Ms. Verizon on the phone with me asked why.
  • I said that I was disabled and wasn’t able to use the cell phone anymore.
  • Ms. Verizon suggested that I rethink my decision and she could make the deal much sweeter if I used Verizon for my landline.
  • I thanked her for the offer but I said I would prefer if I didn’t have to talk about my disabilities just then.
  • Ms. Verizon reacted like a white baby boomer accused of racism.
  • She told me this is a deal I couldn’t afford to pass up. They had things that people like me use like headphones.
  • I said “I understand this is your job but,” and she started talking over me and I continued on, “if you asked me to explain why I can’t use a cell phone I’m going to have to do explain my disabilities to you and I really don’t feel like doing that right now.”
  • There was a long silence, some typing, and then she said, “okay, your canceled.”
  • That isn’t a typo. I could actually hear her spell it in her head, “your”
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Verizon can eat a bag of dicks

Remember I had a caretaker who stole some things and money. Where did that go? Practically nowhere. That’s when my auntie started to fuck me.

At the time auntie L was doing almost everything for me as she had been for the last few years. There were so many little obstacles to get through, like my not being competent under the eyes of the law. Auntie L really busted her ass picking up the slack that my mom’s family had just left on my lap and given how physically and legally disabled I am it would’ve been impossible to do on my own.

I wouldn’t be here for her to play with if it wasn’t for her.

Put on some 80s montage music for the next part.

 

I have a new caretaker: Zari, the same one I wrote about four months ago who had just arrived. She does more than she’s required and she’s here more than her hours are allotted for, she genuinely seems to care about my well-being. That’s new. I quickly got involved in her their family drama as Zari regards me as she would a niece and I genuinely like and care for her family. I became acquaintances with her son. I say acquaintance because most times we talk it’s when he is out of town and calling me drunk. When he’s in town he drinks disgusting protein shakes, I’m not sure which is worse.

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I have another caretaker who helps me at night: Savage (a nickname, yes, but not at all ironic.) Savage and I are almost the same age which I realized might not be a good thing but we got on immediately and she is down to help me with anything. She stays until about 1 o’clock in the morning so it’s become a little bit of a sorority house over here in the evenings. If a sorority house was immaculate and consisted of two salty girls who religiously watch WWE.

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The caretaker that stole my money? She got away with it because my auntie L didn’t submit the final time with the state. It was then that I noticed she was not only more frustrated but short with me so I tried to bother her with as little as possible, that apparently was the wrong thing to do.

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I’m not dumb enough to be disappointed by a disappointing world

Finally when I asked why she didn’t file she said that it was a lost cause so there was no reason to bother. I always plan for the worst case scenario so okay fine whatever but I kept asking her if IHSS was doing an investigation on her because I wanted to make sure she didn’t go on to do this to someone else. Auntie L was unintentionally offensive because she was annoyed with my badgering her, she said it didn’t matter and that wasn’t our problem. Her insistence that we just let it go put ice in my veins. I wasn’t going to sit by and let this happen to someone else if I could prevent it, at least that way it be worth going through what I went through because obviously I survived it and others may not. (Don’t worry, I took care of it on my own with IHSS)

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This is only sort of ironic

Auntie L insisted that I am never make any calls and told everyone for my social worker on not to take calls from my caretakers. Despite the fact that I was still considered incompetent under the eyes of the law, mom didn’t file when I was 18 because she didn’t think I was going to live very much longer anyway. I can’t even speak to my social worker because I recently found out auntie L told her not to speak to me at all and so she won’t answer my calls or return them…

I’m now legally competent. Legally competent but crippled is written all over any records of me and that’s all people care about.

My Social Security was cut $200 each month in exchange for my having caretakers and that disqualifies me from Meals on Wheels. Apparently human contact is an acceptable substitute for food.

Mom got worse very quickly. She became incontinent, she lost the ability to bathe or eat, she was more violent, she was having near consistent panic attacks, and would hallucinate that there was a murderer in the house. She tried to escape many times but couldn’t figure out how to work the handle. The sadness I have over this and my inability to do anything feels like dying and I have almost died a few times only to get resuscitated in the final seconds so I know what that feels like. I can now understand how if you have nothing to fight for you can die of heartbreak.

I felt guilty that mom’s family didn’t know anything that was going on so despite none of them reaching out I put some updates in the family chat on Facebook and a few of my cousins actually reached out. There is nothing they can do, of course, neither live near me so there’s nothing they could do. It meant a lot. knowing that one of them actually cared brought me to tears and I was really proud that they were from my generation. Our parents fucked up but we don’t have to. My cousins children can live in a world where this family can actually be a family.

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It has been said that I’m incredibly similar to this character
¯\_(ツ)_/¯

Mom got into the highest-rated Golden Living facility in the big city. I met with the director Armand who was incredibly nice and personable, the place was small with a large staff and nice amenities like a rather large garden, best of all is that they specialize in Alzheimer’s patients.

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If I were Valentina she would’ve let me keep the mask on

As soon as mom left I went full tilt and getting the house in order. Fixing everything that was broken, going through the literal garbage that mom collected, going through her files which included every receipt she had ever received since about 1994. That isn’t sarcastic. I think the oldest bunch was 1992 or 1994.

And that’s when auntie L lost it.

It annoys auntie L that I speak to her so formally, that I thank her too much because it comes off as condescending I suppose, that instead of saying I need help I ask for help saying things like “if you have time” or “feel free to say no” which sound sarcastic in text and is annoying in person because it suggested that she wouldn’t help me if I needed it. She didn’t like the walls I put up and it personally insulted her that I couldn’t let my guard down with her. Most of all, the thing she hates the most, is being pacified.

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Mother Teresa.
You know she was just propaganda, right?
She had 570 missions in 100 countries by the time she died but so few offered basic healthcare needs like food that in a 2013 a study by University of Ottawa called her a “particular conception of suffering and death.”
She became what the historian Vijay Prashad dubbed “the quintessential image of the white woman in the colonies, working to save the dark bodies from their own temptations and failures.”
You don’t even want to know about Gandhi…

Guilty, your honor.

I did everything I absolutely could to pacify her. She’s definitely got me there. I think I can at least intellectualize why it was so offensive to her. We only saw each other sporadically throughout my life but we were warm to one another and our two households made it clear that they were always there for the other. That’s part of the reason I had my guard up. I know that my auntie L feels indebted to my dad and since she had said numerous times she wasn’t even my real family; I assume she was helping me to pay off the debt to my dad. The context is that she said it when she was complaining about my mother’s family leaving it to her to do everything when she’s not even our real family since she divorced my uncle. It wasn’t intended to be hurtful and I always knew that but it’s hard not to have a physiological reaction to things like that especially because the estrangement from my mother’s family comes from my mother always telling me that they were her family and not mine.

I get it. I have baggage.

I have trust issues and abandonment issues and issues about issues.

There is no personality trait that can’t be as beneficial as it is self-destructive.

 

I admit that I am insufferable at best. I’m guarded, I’m suspicious, I’m untrusting, I’m anal, I’m condescending, I’m pretentious, I’m hyperbolic, I’m pretentious enough to say I’m hyperbolic, I’m prideful, I’m petty, I’m unforgiving, I’m relentless, I’m impulsive, I’m too analytical but also too eccentric, I easily disregard people I don’t like, I’m manipulative, I have no mercy,  I’m independent, I’m a burden, I’m everything you could hate. And thank God for that.

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No mercy!

I will always be a terrible person. Trying to fight that is an unending battle and can leave you in arrested development. As annoying as it is, and I know that it’s annoying, I believe your faults are the reason you are living your current life. You’ve been incarnated specifically to deal with those faults and the reason it takes reincarnation is because the education isn’t about petty things like owing someone money or someone insulting you on the Internet. It’s a collective education because karma belongs to all of us. Learning to allow free will, learning to integrate, learning to move forward. These are things I’m striving toward, above all else, and in my attempts I am often condescending and distant and resentful.

That being said, auntie L now regards me as a terrible person and I don’t necessarily blame her.

I don’t lie but it’s not exactly to keep me out of Hell™ because I’m pagan and I don’t believe in Hell™.

Never lying is an incredible manipulation tool for someone who is powerless. Your story is consistent, it quickly reveals other people’s lies, all you have to do is say what is true, and you get to choose how much of that truth you share. Not lying also allows you to not correct anyone else’s lies.

So this is the current kerfuffle:

Auntie L told me I need to get a renter into the master bedroom and suggested free rent if they get the utilities. My caretakers and their friends and family and my friends rushed to get the house in order and when it was relatively decent auntie L told me she posted my room for rent on Craigslist and there were a lot of responders but there were two guys in particular she thought might work and was going to contact them when she got time.

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Remember Misfits?

I’m not one of those people who is scared of Craigslist so auntie L asked me why I looked reluctant. Specifically, she asked me if the problem was that they were men and reminded me that I said I didn’t care about gender.

 

I pandered: I was concerned about someone moving in that I hadn’t met.

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Remember Strangers with Candy?

What I actually thought was: What the fuck? Why would she post a listing about renting a room in my house and not even send me a link to it or let me be the one to speak to potential renters. Also, Savage had emphatically told me that auntie L was up to something because I could rent that room for at least $600 a month. I said I was fine with anything I got as long as it helped me pay off the two credit cards I maxed out trying to survive with mom these last six or seven years while Social Security and IHSS. I could have called a phone sex line and they would’ve said “I have a headache.”

Savage said she would kill me if I didn’t charge at least $600 a month and my auntie L was planning something.

When she kept avoiding sending me the link I put a listing for myself to see what responses I got and I said I wanted $600. I got tons of responses and I settled on this one guy because he was living in some southern state and he said he was getting transferred here and needed a place ASAP and I felt really sorry for him because who wants to live in the South?

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I can’t believe someone involved with this didn’t point out this looks like a photo essay of gentrification

When we first talked he said “I’m going to be up front about this and if it’s a problem say so: I’m gay and black.” I said, “that’s cool and now I don’t need to apologize after I tell you that I’m crippled and you should also say something if you have a problem with that.” He was a pretty cool guy but he had to wait until they actually filed the transfer and he wasn’t exactly sure when it would be.

I told auntie L and she seemed put upon but after her misstep I thought this was a quick solution and it would take something off her plate so I didn’t have to rent my room through her. She was pretty disbelieving that I got someone to pay $600 and said we would have to see if he would actually pay me.

She also suggested I get a lock on the front door that’s code activated since she always lost every key I gave her and I tried to be noncommittal because that’s not a good idea and I wouldn’t even be able to use it on my own but the next day she had it and told me I didn’t have to pay her back. Everyone told me it was a bad idea and I said that I knew but I wanted to appease auntie L because when she gets mad she loses her fucking mind and I just don’t have the energy for it.

Savage told me that auntie L sounded like a conniving bitch.

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Get it? Gas lighting?

Meanwhile, two of my ceiling fans weren’t working and logistics suggested I have an electrician come out to make sure everything was fine. Both fans are in the same electrical row and years ago an electrician told her that we had a wiring problem since some of the outlets in the kitchen stopped working but I wasn’t sure if he was just saying that. I live alone and I can’t open the door.

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So I decided $90 for peace of mind was better than burning alive. Auntie L happened to show up when the electrician was there and she lectured me very loudly in front of her granddaughter that she had brought, my caretaker, and said electrician who was waiting for someone to tell him where to go. She was appalled that I would spend money on an electrician when obviously all I needed to do was replace the fans. How could I have the audacity to spend that type of money when I constantly say I have none?

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Just tell me exactly where in my head you want me to shoot myself

…I did say I was broke quite a few times. I never asked for money. I was mimicking the Basic Bitch™ conversation starters that people like my auntie L uses. It’s either about the weather or about how they are broke so I thought I responded accordingly, “yeah, the weather is crazy” and “I hear you, I’m already broke this month too.”

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What did she want me to say?

Every someone says that every Gods damn month. We are all broke. Always. Capitalism is killing us. There are two types of people in this world: people who complain about not having money and people who quote Marx at dinner parties.

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Stock photo of serial killers

This is when she told me that she hated how I kept myself at a distance, how I always placated everyone, I don’t know how to be a part of a real family. She said that family doesn’t ask each other for help, they just help each other. Family doesn’t thank each other, they already know they are appreciated.

Does that make any fucking sense at all?

First of all, unless you asked for help how would someone know you needed help and second of all, it’s fucking rude not to thank someone.

A few people have complained to me about my insistent apologies for being a burden and over–thanking people. I get it, no one actually wants to have that conversation and we want to shed our Protestant roots by letting go and being a little less polite and a little more awkward conversation. I am actually working on that.

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Auntie L apparently has the complete opposite problem. I told her frankly that I couldn’t stop speaking formally like that entirely because she is my aunt and also I was always going to have abandonment issues no matter how hard I worked on it. She said no and that I needed to correct this behavior.

I promised to try and in exchange asked that she try to control her anger.

She said no again, she said that’s just who she was and everyone knew that when she was mad she says nasty things that she doesn’t actually mean so I need to do shrug it off and wait until she cools off.

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She then attempted to go for the jugular; she told me I don’t know how to love and that I am nothing like my father. I love my dad, I take after my dad in just about every way, and I lost him at the inconvenient age of 12 and also 13 since all the memorial because I had my birthday that week. People have always complemented me or insulted me by telling me that I’m just like my father. I didn’t appreciate it until I was older and all the things he used to say started to resonate with me like “never speak to the police.”

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I knew you were thinking Freud so I gave you Freud

This insult didn’t hurt my feelings thanks to my big guard that was up but I don’t know that it would’ve hurt anyway because after I accidentally laughed out loud I felt really bad for auntie L because what she was trying to do was cruel so obviously she was overstressed because she was behaving erratically.

Savage dared me to mark her words, that woman is plotting.

She had worked at places like that before and she was telling me the exact same things that my friend, Star, in another state who works in a similar facility was telling me.

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Ugly Laws still alive and well but people keep telling themselves segregation in North America is over

Mom went into Golden Living and I was really nervous because I couldn’t go. To use the public transit going out of town requires an in person interview to verify your crippledness and they couldn’t get me in for another few months even though I had just been approved and awarded with the cripple bus pass for my city.

I laid down after mom had left to get a nap…I was home alone when auntie L let herself in, stood at the edge of my bed, and woke me up with a loud lecture about how I pacify people. She was really doubling down on that word and I admit it is a spot on adjective for my behavior. After she was done with her lecture she turned around and walked back out of the house. I could do nothing but lay there and wait for when my caretaker would come back to help me out of bed.

There are two things that made me admit Savage was onto something:

1. Just like my uncle she wanted to see my see my financials. Ironic that she called his actions deplorable.

2. Auntie L busting into my home to waking me up by harassing me was the “other shoe to drop,” as they say.

She did something similar when she was angry that May called my doctor’s  office to ask if one of my prescriptions was being processed. I specifically asked her to do that because I was laid up in bed with my ankles and knees and wrist broken and couldn’t do it.

This was about three years ago, I think? Auntie L tore into May for overstepping her bounds and then she let herself into my house, stood at the edge of the bed, tossed all of my medical cards she was using onto my desk and said that she was done with me. If I wanted to do so much on my own then I should go ahead and do it, she wasn’t going to stop me. May could take care of it all. May thought she knew everything anyway.

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Fuck my shoe, grab my purse!

I was with May when she was on the phone being rented at by auntie L and she emphatically apologized for any misunderstanding and tried to de-escalate everything by making self-deprecating jokes. It was demeaning, it was something I do every day many times, but it was demeaning and May kept with it despite my insistence that she stop. The situation in no way shape or form should have led to an argument let alone disowning family.

The only reason I forgave her is because May insisted, because if auntie L left I would have no one to help me and she asked that I not give her the guilt of feeling responsible… It was a very good argument. I played along and said things to placate auntie L but they were all true.

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“I’m sorry about this.”

“I feel horrible.”

“I just want to get past this the best way possible.”

“I understand what you’re telling me.”

“Let’s just say that everyone is sorry and forgiven and move on.”

And I did forgive.

I didn’t forget.

At this moment:

Everyone that went to visit mom said she was great and was actually okay with being there because she thought she was working there or that she was on vacation but almost immediately auntie L texted me that I had to cancel my renter because my mother was being sent home. It was Thursday night.

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I called Golden Living Friday morning and said that this is not a safe place to come home to because it’s only me and I can do nothing for her. I asked if there was any way we could transfer her to a different facility. Auntie L had no contact with me but called May’s mother and cried to her about how…

I don’t know. Neither May nor her mother could decipher what her actual problem was because she was bawling inconsolably. May’s mother suggested she, auntie L, and myself get together on Monday since my mother’s discharge was moved to Tuesday and I said I was up for it.

I asked May’s mother what I should do and she said, “I have no idea.”

She said that I know how auntie L is and all I could do is tell her what she wants to hear. I argued that would be pandering, the exact thing auntie L said she didn’t want me to do. May’s mother told me to give up and then we had the meeting…

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Remember when AHS didn’t suck?

Yet another discussion about how I never put my guard down and how I wasn’t trying to be warmer so I said to hell with it and decided to put my cards on the table. In a nice way. I decided to tell them both the thing I wanted them to understand the most because this might be my only opportunity.

I tried to explain that her coming into my house triggers my PTSD and I asked that I not have to go into detail about why that is.

I tried to explain spoon theory.

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I didn’t: spoon theory by name because I offered it to everyone many times and very few people read it, even fewer treated it like it wasn’t a complete joke.

I tried to explain that finding out on Friday mom was coming home and the fact I didn’t hear from auntie L all weekend but Sunday I found out that she was crying about something I had done, and then on Monday we had to have these West Bank negotiations while my mom was leaving the next day when I was going to be gone at an appointment and I had a second appointment the following day. I didn’t know if I could physically bear it and I wanted to use that Monday to sleep so I could make it.

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Needless to say I ran out of “spoons” after that week. I kept blacking out, I was sleeping a lot and I didn’t eat, my judgment became impaired, I had consistent diarrhea, I was doing whatever it is I do in my sleep when I have a lot of anxiety that makes people come in my room while I’m sleeping and ask why I’m crying.

Auntie L went on vacation out of state for two weeks, magically Golden Living was able to keep mom until auntie L got back where it is up until then it was a dire emergency that she come home immediately. She didn’t leave before telling the staff at Golden Living and my own social worker not to speak to me because I’m a liar.

I called Golden Living Tuesday morning and I spoke to Nicole,

Nicole refused to let me talk to Arman who is in charge and kept insisting that “he isn’t here anymore” even though she admitted that he’s going to be there on Thursday.

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An approximation of what Nicole probably looks like

I agreed to talk to her for now and that I know she couldn’t disclose anything personal to me because I’m not on my mother’s contact list but I’d like to know if my mom would be able to be transferred somewhere else and Nicole responded by telling me that I was lucky that auntie L was helping me because the rest of my family abandoned me.

“your family abandoned you.”

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Speaking of gentrification

Auntie L put May’s mother as the emergency contact without asking her or telling her about it. I was talking to Nicole yet again on speakerphone and she told me that I was wrong, that May’s mother had been there with auntie L and she said she would be the emergency contact. I had no idea that May’s mother had come into the house and was listening at the door but at that moment she was suddenly leaning into me and telling Nicole that what she just said was a lie.

She pulled a total Batman.

I busted my ass to get all my documents in order and protect mom is much as possible and auntie L is due to be home in a few days and she’s been texting everyone

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I know I’m petty but she doesn’t know that May’s mother was with me listening to the conversation and she can verify I didn’t yell or curse and that just makes me so happy… But,

What the fuck do I do?

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I have no idea when my mother is coming home or what state she’ll be in, if there is anything being scheduled with a doctor, she needs to be comfortable while she is here but all I have time to do right now is gather some things she likes around her bed, she gets so scared at night and she hasn’t been here in a month so I’m afraid that when she hallucinates she might hurt herself again and auntie L said (and Savage and my other friend verified that) I have to take her to the ER and tell them I’m not capable of taking care of my mother then leaving her there.

 

No one ever says that the reason having a relative with dementia is so difficult because the state makes it that way. Imagine how much money, time, and resources they would save if everything was done efficiently.

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Dumb sons of bitches.

But auntie L said if we do this mom will “belong to the state” and “they will have to take care of her.”

I had a movie montage flashback to all the times someone had said that I belonged to the county while I was growing up.

It occurred to me then that a lot of the problem is that they are entering my world, the world of disability. Mom is joining the community and the rest are dropping by but they can’t comprehend anything they see because they are so sheltered. They had no idea what it was like to degrade yourself many times daily just to survive. That these statistics of murder and rape were real when they had never heard it being reported on. That instead of getting ready to go out by fixing your hair and makeup you have to take painkillers and lay down for as long as possible.

Auntie L then informed me that I had to keep mom at the house for at least a week and couldn’t call 911 if anything happened because then they would take her to the ER and then she would get sent back to Golden Living who would have to send them back to us.

I mentioned that she was already choking me before she had even left and she literally told me to “try to survive for at least five days.”

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Stewart: 0

Savage: 1

This is something I didn’t know I wanted

I love Tumblr. I love the discourse. I love people pointing out ableism to me that I hadn’t been aware I was angry about.

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Isn’t it funny how in some countries people choose to advertise that they have a marginalized sexuality or gender and even specify which one while in other countries they are murdering people even suspected of associated with people of gender and sexual minorities? Ha ha ha…

There is a trend to make a pride flag for each individual marginalized group that falls under what people refer to as the LGBT/LBGTQ/LGBTQIA+/MOGAI/GSM etc. communities, the flags a derivative of the official rainbow flag. It became a meme and a profitable new product for a niche market. Some of these flag’s colors have become standardized but some still have competing designs that are fighting for popularity and the flags of representation have expanded to represent certain fetishes.

And of course there are plenty of joke ones.

It’s cute. It’s something fun for everyone, even kids stuck at home with only paint installed on their computer. It encourages camaraderie and bonding within each communities. Some are pretty cute and funny.

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The “straight pride” is in reference to straight asexuals in case you were wondering.

But tonight I found the best one.

Someone on Tumblr proposed a design for a chronic illness flag and thus ensued…a really good set up for a pun about angry, or, flaming queers but in good taste I’ll tumblr_inline_op92a0dKlL1ra077e_540let it slide. Anyway, the LGBT/MOGAI were highly offended.

I have no idea what the flag’s original intention is (if it was meant to instigate anything or not) and I’m not completely sweet on the colors but this is probably unintentional genius.

It’s this specific comment that I’d like to address, admittedly because it’s mostly low hanging fruit:

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The “LGBT” community has ostracized disabled people just as every other civil rights group has. Year after year we asked that Pride parades at least be accessible and the few that have at least attempted to be use that as their get out of jail free card for any other issues concerning us. Mogai is an apple that didn’t fall from the corporate charity tree, they aren’t the Amazon or Walmart of gays but besides lip service everything’s run essentially the same way.

Speaking of corporate charities… We don’t have “ribbons”

NTABs have ribbons.

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This is cute, I would actually wear this if I was as pretty as Morticia Addams

It’s a traditional gesture to show support toward a person or cause, originally used to honor soldiers. The pink ribbon everyone knows and loves as well as all the other ribbons that tried to ride their coattails of by assigning different colors to different disabled groups.

I’m not the kind of person who brings Nazis into every conversation (I’m lying) but that’s a little on the nose. I will say that this tradition has persisted through the military who is the reason so many people become disabled in war zones and many of those wars are over nothing but eugenics in the first place. Also, disabled people couldn’t serve in the Armed Forces so technically the ribbons haven’t been ours for a very long time.

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He’s thinking about the irony of voting against abortion despite his participation in killing thousands of children overseas

The only other group that has made a tradition of using ribbons as emblems are people throwing excruciating children’s birthday parties.

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We get it Becky, you have expendable income.

Not only is it a meaningless gesture of support, not a symbol of representation, it negatively impacts disabled people because NTABs feel like if you buy a pink ribbon you have disability covered, you don’t have to ally for us any more than that.

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Charlotte Haley
December 29, 1922 – February 2, 2014

The first pink ribbons representing breast cancer were put together by Csusan-g-komenharlotte Haley and each one included a note that said “The National Cancer Institute’s annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up legislators and America by wearing this ribbon.” It wasn’t a sign of support or a shout out to someone who had died, it was a call to arms to actively do something for the civil rights of disabled people. Estée Lauder took it and the branding behind it to make it a meaningless product. Haley fought them but they avoided it by changing the hue of pink and copyrighted it as their own invention. Susan G Coleman can, has, and will sue you if you make your own pink ribbons, even if you are doing it for an actual charity.

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Think Before You Pink

Those ribbons are symbols of the commodification of disabled bodies. It there’s an organization trying to help disabled people run by people who aren’t disabled they are only interested in making money off of us. Ironic how often they complain what a financial burden we are when our lives are and extremely profitable industry. So they can entice NTABs to buy their way into heaven.

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I’m obviously being facetious here

There is a cure for everything, we just need to find it. Everyone wants to be cured. No one is happy when they are disabled. Disability means the end of your life. Getting a diagnosis is weak and taking medication is giving up. You either have to be an inspiration to NTABs or you have to die tragically to get them to keep spending money, making people feel useful by buying a pen with a pink ribbon painted on it so they can tell themselves they are a good person.

All of that aside, you think chronic illness isn’t a sexuality or gender?

Chronic illness is a sexuality and gender unto itself regardless of biology. People with chronic illness are considered and made sexless, it’s compulsory asexuality. both in that gender is inconsequential because social formalities between genders can’t be as heteronormative our sexuality is nonexistent, asexual by default and aromatic at best. It’s compulsory asexuality.

Disability is a social construct. Gender is a social construct. Sexuality is a social construct. A person born disabled is assigned asexual/agender at birth and is thus queer. If you’re still having trouble gC-o-Zp9VYAARoqGrasping that concept you shouldn’t be talking over people, especially disabled people.

I get that that’s inconvenient for queer NTABs because it’s yet another reason they should stop ostracizing us but if it weren’t true why did I and the disabled children I grew up have pronouns like “wheelchair” or “crutches”? All words without gender specific etymology.

Why were we told crushes and dating were for the normal kids?

Why was it so casual in California for disabled students to be sterilized. Why did anyone think it was okay for me as a 10-year-old child to be in a meeting with County administrators discussing about how if I ever did have sex it would be rape, and anyway it’s not as if I should be allowed to reproduce in the first place. How come it wasn’t until I was 30 years old (2015) that it actually became illegal to forcibly sterilize people in California?

My story about gender is such a cliché it’s embarrassing. I thought gender was something that developed in puberty because in the media there were only men and women and none of them were disabled. If I diC-pW8zVUIAADU4Pd see a disabled adult they always found a way to work in how they don’t have a normal/acceptable/fulfilling romantic and sexual life so they didn’t count as actual adults. I also knew that everyone was telling me that gender didn’t matter because social taboos between genders didn’t apply to me because of my disability. Cripple has and is the name of my sexuality. I knew that I was never expected to get married or to date because I was very bluntly told that, as were my disabled peers. I knew that I was told I had a uterus which is something all women supposedly have but should and would. I didn’t “need it.”

I believed, like a lot of kids in my situation, that gender was a choice. It was a choice that could even physically change you. When adults started talking about how I would be going into puberty soon I would spend time sorting my into girls and boys piles to decide what gender I was going to pick, what toys I could keep. I was scared that I would have to pick soon because if you want a penis and weren’t randomly born with one you only have a second chance to grow one at puberty when you pick a gender. So if I wanted one I had to decide ASAP.

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Wow Susan, these cookies are so good they cured my radical feminism! You have to give me the recipe!

Kids, am I right?

We weren’t “born this way” because we were born with no intention of being any way. NTABs, even queer ones, will never be able to understand what that is like just like a cis person can intellectually understand what a transgender person is going through but they will never ever really know what it’s like.

Disability isn’t about sexuality and gender? Bullshit.

I get that it complicates things for you, especially because there are technically a lot of heterosexual people who are queer if they happen to be born disabled. More alphabet soup. Less ways to ostracize disabled people.

So, someone made a JPEG based off of an LGBT™ meme to represent chronic illness? Sign me the fuck up. I’ll take one in every size.

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What the fuck just happened? I come into work and Spider-Man hands me a pamphlet on social constructs. What do you think this is? Some 30 Rock from the Sun shit?

And you think mogai is going to get away with this shit as well?

Do it and become synonymous with hypocrisy.

Diary: Happy birthday!

I’m the one that says “I don’t like fancy dates, just some take-out and a movie is okay with me!”

I’m like a golem, if you follow me I’ll lead you to a man in a khaki sweater.

It’s officially March 4 so it’s my birthday!

I try to have no expectations whatsoever. I hate birthdays anyway, you would think it was because my dad died nearly on my 13th birthday and his funeral was scheduled for the day of but I’ve always hated birthday parties anyway.

Dad always made all-cry-until-my-parties-and-flamesa big deal out of my birthday, I always assumed it was because he loves big parties but when I got older I realize that my birthday had genuine meaning  to him. Each year dad would throw this huge party and we had no money so it was all thrift store decorations and the activities usually included whatever you could do with a jar and safety pins. I was very bad at that game. Shout out if you know what game I’m talking about.

hamilton_linda2One year I tried to implore my father not to have a cheesy birthday party for me anymore because he was giving me a quaint childhood and all the movie characters with quaint back stories were the absolute worst. I thought I made a compelling argument but in my dad’s defense I did have a very small vocabulary at the time so how I explained it might’ve been misleading, “I don’t want a party with baby stuff, I want to be like the cool girls. I want to be like Sarah Connor!”

In retrospect I don’t think he knew that Sarah Connor was that goddess from Terminator. He would eventually figure it out because I would go on to talk about her and those movies over the last whatever years until he died. If you turn off the lights, look at yourself in the bathroom year, and say “I don’t know what to watch” I will appear behind you with the VHS copy of Terminator 2.

sourceAnd yes, I know how cliché that is that my favorite movie is Terminator 2. Well, until someone makes a movie greater than Terminator 2 I’m not going to change my answer because you’re tired of hearing the truth.

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Where the fuck was I…

feel-awkward-party-new-years-eve-introvertSo, there is a huge horrible birthday party for 12 years then my dad dies while I turned 13 and I never had another birthday party since. It sounds soap opera sad but it’s legitimately because I hate parties. If the party is for you you feel obligated to be constantly tuned in and making sure everyone is having fun and you have to stay until the very end. If the party is for someone else you constantly feel like you are in the way, mostly because people keep tripping over your wheelchair, and you are constantly looking for a way to leave so you can’t enjoy yourself even if enjoying a party was even remotely plausible. I celebrated my birthday up until my mid-20s by buying myself a cake and now a few people give me gifts, every lonely stranger that friended me on Facebook posts some clipart on my wall, and my common law Boston best friend May has always come over the day of, or the n8370303b4354affa04a84cb8031353ffearest weekend day to it. We usually just have fast food and watch TV. Which is what I would prefer.

I’m the personification of one of the results from that little dream date quiz in those old teenybopper magazines, I’m the one that says “I don’t like fancy dates, just some take-out and a movie is okay with me!”

I’m like a golem, if you follow me I’ll lead you to a man in a khaki sweater.

So Logan is coming out right now and I am an X-Men fanatic and of course this one is big. But the car has been sold but but I finally got approved for the handicapped transit so I make plans to go to see Logan with the May and the only other friends I havtumblr_ok1cbtvrpg1u7j8h8o1_540_zpsa0k2ez66e IRL: sisters Kitten (older) and Darrell (younger). Saturday technically is my birthday but May agreed to babysit her nephew then. It’s weird that she would make other plans on that day given it’s a Saturday and we could actually hang out for a while but when the joke came up of her picking her nephew over me she said “I’ve been giving Stewart my undivided attention for 20 years, it’s someone else’s turn”

When I called transit to schedule a pickup they told me that they didn’t go that far toward the outskirts of the city on Sundays. My guess is that it’s because you have to go under or sticker420x460-pad420x460f8f8f8-lite-1on the freeway to get to the theater and driving on the freeway probably cost them more in insurance and on Sundays you would have a lot of old disabled people wanting to go to lots of different churches and the city is covered in railroad tracks and freeway overpasses.

So the plans were canceled and I tried not to be disappointed but then I thought, fuck it, May and Kitten aren’t free but Darrell and I can go on Monday so I asked her about it and she says okay. Soon thereafter May sent me a message saying that if I wanted she could try to get half a day off sometime next week so I told her Darrell and I were going on Monday and asked if that was too short of notice and she got jealous.

She’s extremely jealous and she will even admit it because she’ll inevitably fail at hiding it. She’s like a jealous boyfriend, if I say “I got this DM from this random guy/girl” she gets all tense and asks what the loser wanted and wants me to verify that I did, in fact, tell him he was a loser at some point. This one time she stopped inviting me to stuff because she said that people like me more than her and she didn’t want anyone to take me away. She literallkinseyy stobbed when she said that.

One would think romantic feelings, yes? No.

I was raised to believe that dating, love, and romance are some things disabled people can’t have so it’s easier to follow that conditioning despite the fact that I do find her attractive. but I know very well that you can love a friend as a friend, have a sexual reactions to them but if you recognize the love for what it is and don’t be weird about it everything is fine. I’ve never in romantic love with her but when we were teenagers I earnestly suggested that we get married if she didn’t find a boyfriend by the end of high school. Gender equal marriage wasn’t even a plausible talking point then so at the time it meant “let’s do the lesbian U-Haul.” I thought it would be a good idea because we had these idealistic dreams of somehow leaving home and making do somewhere, even if it was in the house next door, as long as we weren’t living with our parents anymore. She was right to have concerns but I don’t think her first one should have been “then people will think I’m a lesbian!”

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This could’ve been May and I at prom

Everyone assumes disabled people are asexual and agender but anytime I show any sexual attraction toward men people look at me funny although among my friends it means “oh, that’s exotic.” I’ve learned to immediately squash any ideas people are having because if I don’t someone is going to turn thoughtful and say how must be hard to never be able to date. And they say it in front of everyone and their impossible to shake. You try to cut everyone some slacken and make a joke about how of course no one would ever want me and then they get embarrassed and tell you how despite everything you are great. You are not like the others.

tumblr_lh6didd4xx1qafrh6I know disabled people joke about having to hear this complement all the time but I seriously think I’m at least in the top 10 able-bodied approved cripples in the county.

When I was about 10 years old I was in the Special Ed room, probably because the short buses were running late to pick us up again. There was a young boy there, about seven, who had a condition that affected his dexterity so he asked the teacher if she could draw him a picture of the day he’ll get married.c228c3d80df782211e40371e23fa702f

Adorable, right?

So I kept an ear on it to suck up the whimsy that was slowly being drained out of me and I heard the teacher say, “you don’t like it?” He asked, “which one is me?” when she indicated which one I expected to hear “just like you, some people have wheelchairs and since you will marry someone you love it won’t matter what their body is like” but she said, “because you’re in a wheelchair.”

He asked, “why does my wife have to be in a wheelchair too?”

I tensed up.

I saw some of the aids start to look uncomfortable but the little boy said “but I don’t want to marry a girl in a wheelchair.” They all began to laugh.

I don’t know why I would expect differently seeing as how when I was his age the same people were working and I was complaining about how frivolous Valentine’s Day is and someone offhandedly said “you will feel differently once you hit puberty” and I insisted it wouldn’t but everyone ignored me and one of the aids asked me if I meant it. I had no idea if I meant it, I was a child for fuck’s sake, I did know that I wanted to go to my grave never admitting defeat so I said yes. She looked sad and I immediately knew I was about to console an adult about my life. She said, “that’s good, because you can’t. Not that you can’t, it’s just that you have to find someone…” And I jumped on the grenade by doubling down on my stubborn tantrum and insisted that in no way shape or form would I ever have feelings for a boy, that way they cou125ld begin their “remember when cooties were thing?” discourse.

I wasn’t wrong anyway. Technically the youngest males I’ve been attracted to would have at the very least been described as young men.

My feelings on Valentine’s Day have also not changed. I don’t like candy. At least on Halloween you have the option of a trick. On Valentine’s Day you have to skip out on your trick and go home to your girlfriend.

I used to worry that people would try to throw me a surprise party for my birthday or unexpectedly show up with some socially acceptable token but that’s never happened (thank God about the surprise party.) Relatives stopped calling until it was just one or two every few years and now my maternal family as apparently disowned me but I’m also thankful not to be taking those calls anymore.

I can always depend on Facebook, though. I could have sworn this site would be dead by now but even I’m still on it, even if only to use the messenger. Which is why I got my first message on my birthday. It’s from my first caretaker who, right now, has signed time sheets and if she sends them in then the reimbursement will be given to her and she would have to decide on whether or not to keep it or give it to me, since it’s reimbursement for the money I had already paid her. So now the ball is in her court. This is what she says:

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Again, I have not answered any of her messages since it’s just between her and IHSS at this point. The money would save my life, it would clear up my credit card she maxed out, property taxes are due, I just bought groceries and I’m going to be spending my birthday deciding which bills I’m going to feign having lost.

God, such a bitter Betty. I really don’t mean to be but I’m tired and it’s a lot of work to keep the Chosen Cripple™ act up and make sure no one has a chance to get the word “inspirational” out of their mouths.

All I really want to do today is have some 420 snacks and watched Korean soap operas.

Happy Birthday

Diary: First

He cut me off screaming that i was lying and assuring me that I was completely unrapeable. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over”

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I hate memoirs. If you live a life worth being studied someone will inevitably do a biography on you so stop being so presumptuous. When I started writing (publicly?) people always assumed I was writing my memoir because they say you write what you know and people assume that if you’re in a wheelchair all you know is about extended sitting. When I said no, I hadn’t written my memoir, people encouraged me to try. I have funny stories. I have scary stories. I’m vaguely personable. Obviously everyone would love to read about my life.

What would really annoy me is that I knew they wanted me to give them some Secret Garden shit. No one really wants to know about disabled people’s lives. I spend 90% of my time and energy trying to keep able-bodied people sheltered from disability. All disabled people do. Well, unless you’re one of those douche bag guys that fell down while bicycling and now tours elementary schools to tell kids that you’re still a person.

My opinion changed when I suddenly became an adult one day. I saw young teenage girl on tumblr complaining about a specific type of oppression in schools of disabled kids that I had also gone through and at first I was so excited, I so rarely see people who had childhoods anything like mine. But then I realize that she was a child, that she was going through the very thing I had gone through nearly a decade earlier and I felt responsible. I know about the horrible things that are going on and I know that children out there are suffering these things right now, and they have no idea what’s coming next, but I do.

But my life is a shit show, what can I do? I live in abject poverty. I have a terminal chronic illness. I have no resources beyond what Google offers. But I started posting little anecdotes about myself and what it was like growing up disabled and I was overwhelmed with how relieved disabled people were to see something relatable, as I had been, and the able-bodied people were aghast.

This micro concern, to me, came at a time in my life where the world had come to an end again.

My mother and I never got along, my father raised me and I was very close to him but a week before I turned 13 he was killed in an automobile accident. At that same time my mother got laid off and my father’s parents had just died so what little glue that did hold the family together was now completely gone so we were left pretty helpless. Of course, that’s when I get informed that my spinal atrophy had caused me to have scoliosis so bad that my spine was bent over and was crushing one of my lungs. I either had to go in for multiple, extensive, dangerous surgery or I could wait about a year and slowly suffocate to death.stock-photo-27171500-child-handicap-problem_zpsd3a29371

That was the beginning of my first rock-bottom.

My second rock-bottom was right out of high school when I started to get stomach pains. Excruciatingly long story short, I had a bacterial imbalance from some bad food but the wrong dosage of medication was given to me at the hospital and in a Rube Goldberg style medical care in attempts to cover up mistakes that led me to be on my deathbed. My intestines had been all but eaten away in my stomach was destroyed. Blood was coming from my nose, mouth, and anus. I had a hard time staying conscious.

The third, and most recent, time was when the water and electricity got shut off.

Mom had obviously been developing dementia for years but she refused to the doctor, she said it was simply “old age” which I tried to explain was not a legitimate diagnosis but she felt ashamed and frustrated given how bad our lives had been up until then. The only actual friend I had was May and it wasn’t like she could persuade my mom to do anything. My fraternal family is all local but we had completely split apart after that rash of deaths, I kept in sporadic contact with my auntie L but she was a single mother with three children and I myself was a child for most of my childhood so it’s not like we were really going to hang out or anything. My maternal family, which I never considered my own family because I grew up with my mom explicitly telling me that my dad’s family were losers and I belong to the family, her family was her own. They are a big extended Mormon family and as my generation had reached adulthood everyone was scattered across the country.

One day the water and electricity got shut off and I found a word of unpaid bills for three months that mom had just dumped. When I confronted her she was completely apathetic and said she just didn’t care anymore. Mom was always theatrical and constantly bemoaning her fate so that wasn’t anything new but the apathy was, my mom only had two emotions: anger and suspicion. Apathy meant some major neurological revisions.

Mom had racked up about $20,000 in credit card debt. It’s not like she bought anything extravagant, she just never worked after dad died. She had us both living off of my disability and credit cards. Mom had also bought a used van because I need one that has wheelchair accessible and the old one had broke but this one constantly broke as well. Mom tried to return it but she was under a bad contract and every year we ended up spending a couple thousand dollars to fix something on the car that never seemed to work. So, it’s not like that money went anything fun.

44cb9d16ed7e49cb02a923343f8028f0I took over everything and I covered for mom who was still refusing to see a doctor. At that point she admitted that something was wrong but argued that if she went to the doctor and they diagnosed her as having dementia my social worker would probably take me out of the house and put me in a home because my mom was my primary caretaker. I made it for a while but eventually I was only allowing myself to eat once every three days and it was always pizza because I’m too disabled to cook and they are all we had near at the time. When things got too smelly I would order us new pairs of pajama pants to wear off of Amazon because neither of us could do the laundry.

Yada yada, I made very thorough suicide plans. It wasn’t a dramatic thing. I just worked out what I thought I could do over the next two years to get mom insurance and everything else she would need and then to put all of the affairs in order since mom wouldn’t be able to do that on her own and then I was going to kill myself because I wasn’t going to permanently move into a home. Fate worse than death. I shared my plans with May and she insisted that calling my auntie L and asking for help should at least be on my list before suicide and auntie L decided to step in and help me. She has been the only one. Initially my grandfather paid off one of my mom’s credit cards saying that would count as her inheritance which was incredibly generous and I appreciated that he attempted to help with money since he couldn’t help physically but after that whenever I spoke to him he informed me that I needed to just give up and move both my mom and myself into a home.

He also called on my 30th birthday, my landmark birthday of living with a terminal illness my whole life, and told me how much he loved me and how fervently he and my grandmother pray for my death each night so I’ll be able to “run in heaven”

I would rather sit in hell.

Then?

Then…

Luckily for me, I just had to fill a friend in about all of this so here is the email I sent him:

I81860186b40f850252b5906a491ebd58 don’t know what you know and what you don’t know. I don’t know all of what anyone knows which makes every “how have things been” very tedious. Forgive me if any of this is old news or if I just start being absolutely confusing because my memory and cognitive abilities have taken a nose dive from all the stress.

 Mom has Alzheimer’s and refused to go in for treatment. I was told growing up that mom’s family is not my own so I didn’t go to them for help and my dad’s family who haven’t sent out their cease-and-desist letters yet are just my auntie, her three children that are about my age and their very young children. All of them have extremely busy lives, intense careers and children to prioritize. If I went to any of them for help I would never be able to repay them and it would take time and money away from my cousin’s children. I figured it also didn’t really matter because I was nearing 30 and the doctors had promised me I wouldn’t make it past that so I was trying to bide my time and take over mom’s finances so one of her family members could easily transition into helping her when I died.

Things were beginning to become unbearable. At some point I couldn’t get either mom nor myself to any doctors appointments because the car completely died, we would eat about once every couple days and that tended to be whatever could be delivered to the house. Also, neither of us could do laundry so everything was dirty and so I bought a cheap pairs of pants on Amazon each month. The house was always tidy but if anyone looked close it was obvious that it was dirty and we started getting a bunch of ants. Mom, of course, became more violent than usual and she had already hit the ceiling on verbal and emotional abuse so that stayed about the same. The whole thing sounds crazy but I suppose the situation was a lot like with those women who stay with her abusive husband’s. I literally had nowhere I could go, so literally I couldn’t even leave the house since I can’t get the door open on my own. My mom has been extremely abusive my whole life so I was already used to this sort of thing.

The only person in my life I could actually go to was May but years before when she was going to therapy her therapist advised her to not be a part of my life. People like me always have horrendously depressing lives and May should stop seeing me so she would be less stressed. Without knowing that’s what her therapist said her whole family came to the same conclusion. Of course I won’t tell you why she was going to therapy but it was for something extremely serious and instead of addressing that she was counseled to take me out of her life, although I was totally unrelated and since her family assumed the reason she was going to therapy was because of me, because being friends with a disabled person literally drives you crazy, they were giving her the same advice the therapist was somewhat coincidentally. May went with it, and I don’t blame her because telling her family what had happened just wasn’t an option for her. I feel guilty but there were a few times I regretted forcing her to see a therapist but it’s not like I’m a saint. May took the therapist’s advice and started to distance herself from me, trying to join the circle of friends her siblings belong to whose problems were a lot easier to deal with because they were all healthy and had a lot of money, mostly family money. Then mom kept getting more violent and one day shoved me out of my wheelchair breaking both my ankles, my knees, my wrists, and my nose.

So at that point the cat was out of the bag and everyone had some idea that things weren’t going well here, at least that mom had Alzheimer’s and I let her tell everyone that I had simply fallen. My auntie, who is a good person, forced mom to go to the doctor and tried to start the paperwork having an in-home aid while I was living in a home for a while which was a complete nightmare. I’m lucky nothing too bad happened to me because about 90% of women get raped in homes and while I was there it happened to another resident. I didn’t get out of all the statistics, though, because the staff was pretty bad. My casts were removed because they were put on badly so on top of the excruciating pain of all of those injuries and the fact that I was always given my medication late my legs were constantly being messed with. If I couldn’t keep from crying when I was doing something like changing clothes the nurses would yank on one of my broken legs to “give me something to cry about” and one time a nurse then had me down against the bed and asked me if I was calling for my mommy and telling me how pathetic I was for crying all the time.

It didn’t really brother me because I knew that she could never trade places with me, she wouldn’t last a second, but I learned my lesson and never complained about anything and cried as quietly as possible. I also got in trouble because my roommate was supposed to lose weight as part of her rehab but she would steal my meals and I didn’t say anything. Obviously I didn’t want to complain but I also didn’t care because I was so used to not eating and so incredibly sick from the stress anxiety and depression that when I tried to eat I would just throw up. I felt a little bad that I was ruining her rehabilitation but I figure she was an adult woman and can make her own choices. If she wanted more food she should be allowed to have more food.

My mom’s family was informed about the situation and my grandfather said “you both need to just move into homes” aunt ML said “she’s just getting old, it’s not Alzheimer’s and it was just an accident” and aunt K said, “that’s too bad.”

Did you know the thing about aunt K? My father and both his parents died around the same time so my mom got my inheritance pretty much on my 13th birthday. K immediately asked for $10,000 to buy a new car because hers was broken and mom actually gave it to her saying “it’s not a problem because I know if I ever need help you’ll be there for me” when actually she was doing it because she wanted to impress her mother who she believed hated her but when grandma found out she wasn’t happy and said that K was a narcissist and would never pay it back. Before my accident when I was trying to get mom’s affairs in order and pay off these two credit cards she had maxed I had no idea about I got so frustrated that I called K and explained we were in a bad spot, my mom’s credit card debt was ironically $10,000. I asked if she could begin to pay it back, even if that just meant a few dollars a month. She was immediately furious and said that that it was a gift and I was completely out of line; I’m a very petty person so I couldn’t stop myself from saying “Grandma was right about you, she begged mom not to give you the money because she knew you’d never return it” K went into hysterics and refused to speak to me but mom refused to speak to her because she was so embarrassed to be asking for money but we arranged for K to send $50 a month to pay for half of mom’s medication at the time.

This is all relevant later, I wasn’t going on a tangent.

I wasn’t well enough to leave the home but they evicted me because I was there for “rehabilitation” and as I am disabled and will never be “rehabilitated” it didn’t count and my insurance wasn’t paying for it anymore.

Torturous months go by that I won’t give you the details to but eventually I’m well enough to be back in my wheelchair and after a few months of that I was strong enough to do more than just sit or fall out of it so I tried getting back to my attempt at putting affairs in order meanwhile my auntie L was still trying to get any type of help, even Meals on Wheels but when they say you have to spend a few years waiting they actually mean it. Nearly on the very anniversary of my first fall mom knocked me out of my wheelchair again. This time it was an accident because she was having a confused episode. Once again I broke both of my ankles, my knees, my wrists, my nose, and this time I bruised my ribs, had my front teeth broken out, and had the skin scraped off of half of my face. Did I mention at this time I fell out of the car? That’s probably why it was worse. Apparently it looked pretty bad too because there were a few people who saw me even after I was all mended and cleaned up and just burst into tears. I think that’s a bit dramatic, my heart goes out to the Elephant Man.

I get sent directly home because the insurance isn’t falling for it twice and it takes me about half a year until I can get my wheelchair again, auntie L spent the whole time trying to get anything accomplished and nothing ever did. It again takes me a long time to get enough strength to even drive my chair and of course mom had just been steadily declining and she started losing the ability to cover up any type of violence. Super long story short, my aunt found someone who did caretaking under the table for a friends family member and so I hired her. Auntie L had figured out that as long as we have documentation of her pay and her hours that once the government did approve getting some in-home assistance the government would reimburse me. So, I have no money whatsoever but I do have a credit card and PayPal so for about a year I use my credit card to give her $350 a month. She is a nice woman, I understand she was never trained in anything and being thrown into the deep end like that would have been terrifying, so I let her come and go whenever she liked as long as she made sure mom ate every day and did the laundry. We were having no improvement with IHSS, auntie L finally broke down and went to their office in the capital and threw a fit, threatening to sue so they expedited my case. That was a few months ago and for me to be reimbursed my caretaker had to be verified by the government which means she had to have her fingerprints taken and go to a two hour long seminar which apparently cost her $100. It took a couple weeks to get her to finally do all that. The next few weeks we kept waiting and urging her to feel out the time cards so I could get reimbursed, meanwhile I was still paying her through PayPal because she had to send in paperwork she hadn’t yet for her to get her check from the state. She kept making excuses and the thing was she didn’t want to account for the money because she was afraid of what it might do to her Social Security and was afraid of paying taxes.

My mom’s family never came to visit and for some reason think I’m lying that mom has Alzheimers because until recently she could hold a very short phone conversation that they could justify as her just being slow and forgetful because she was getting older. Mom stopped being able to speak on the phone at all about a month ago but her older brother Cox started calling and I ignored it because, like I said, they aren’t my family and I had constantly been reaching out to them these past few years to at least come visit mom while they still can. Also, Cox has never spoken to me let alone looked me in the eye. I don’t know if he is grossed out by me or if it’s some social status thing because he got in on IBM in the beginning and is extremely wealthy and fucking pretentious. Grandma and grandpa got us all out to dinner one time years ago and it was a little bit fancier than an Olive Garden and mom commented on how good the food tasted and I swear to God, he scoffed and said, “I’ve dined at the finest restaurants all over the world, anything I get here will won’t impress me.” Mom was actually in awe, I wanted to punch him in the face.

Anyway, Cox had been calling at first it just went unanswered and at the time I decided I was going to try to put my feelings aside and advocate for my mother since she couldn’t and I knew that she would have wanted to talk to him. So, I called him and I vaguely explained where her health was at, when and what her next appointments were for, and that we were in debt but on the waiting list for caretakers but we were trying to get expedited. He asked a lot of invasive questions like “well, what are you wasting your money on?” and informed me that I would be sending him my financial records and he would tell me what I needed to cut. I sent him the information because I am very very petty and I wanted him to see proof of all the money I receive each month and that only expense that wasn’t “necessary” was cable but I was keeping it because it was packaged with the house phone and our Internet and was actually the cheaper option. Before he argued that I didn’t need the Internet, I let him know that I physically can’t pick up the phone anymore so I use Skype to make all my phone calls and therefore need the Internet. While I was sending him all that he called the house and because of my luck my mom picked up and he told her that I was telling the whole family that she had Alzheimer’s so I could steal her money (the only money she’s ever had was my inheritance which she gave to K and any thing left over was she spent on redecorating the kitchen right after dad died) she was obviously confused and terrified because I had been trying to get her to believe that everything was relatively normal and he literally screamed over the phone that she need to sell the house and put me in a home immediately. I had to call my auntie over to calm her down and I called him back again and was condescendingly nice and pretended I thought maybe there had been a misunderstanding and he hadn’t heard me correctly but then he literally started screaming at me. That I was a liar and that he knew about K so I was obviously trying to “extort” money out of the family, the only reason I called him was to try to get money at him. To spite him I stayed calm and spoke in a normal tone so he had to stop screaming I told him that the arrangement with K was with mom and each month the $50 went into helping pay for medication. I said that going into a home again wasn’t an option, that they were very dangerous places. He cut me off screaming again saying that i was lying and assuring me that I was completely unrapeable which is kind of a weird complement in a way. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over” and hung up and haven’t heard from any of the family since. The next day the $50 check came from K so I mailed it back with a note thanking her for the help and apologizing if there is any misunderstanding or she felt coerced into sending money because I told her what grandma said about her which I acknowledge was not the proper thing to do given that she had just died. I also apologized if she felt I was “extorting” money out of her. I was hoping the quotes around extorting made it clear that I was referring to what I assumed were conversations between her and Cox.

At this point, mom is really bad and can’t take me to the bathroom or get me up and I sleep with this really old cell phone in case of emergencies but I’ve gotten so weak that I can’t push the buttons so I was stranded in bed the whole day but luckily May stopped by that night because she was coming over to do something.

So now I’m completely back to where I was before she started working here and although I can now hire someone from the state to come to my house it’s going to take a couple weeks and there’s a very good likelihood that I will never get reimbursed for anything because she refuses to send in the timecards. Things aren’t so bad as before because coincidentally last week I finally got approved for Meals on Wheels but those are TV dinners which neither my mom nor I can even warm-up. And I finally got approved for using handicap transit. Public buses aren’t accessible but if you can verify that you are disabled which I could (but it took weeks of suspicion so I can’t imagine what it’s like for people who aren’t so extremely gimpy) which means I can finally go to a doctor. Maybe a dentist so I can get some front teeth. Certainly my GP who I have to somehow get to this week or he’s not going to fill my medication anymore and if I go even a day off my medication I can have a heart attack and die. I had planned on the caretaker being here because someone needs to stay with mom and I need someone to go with me but I wasn’t completely concerned because I was sure I could find even one person who could free up the morning but now I need two people and May is working, her mom is taking care of the grandchildren, and my auntie will be taking some of her grandchildren to school out of town.

We are trying so hard to find a place for mom but no one is taking new residents. We have a little help now because since my dad was in Vietnam the Veterans Association might pay for her to go to a private home. I really need someone to live here but I definitely wouldn’t put anyone through that until she is gone. Even so, that doesn’t seem likely. I’m only asking that they pay for their own food and utilities and their chores. No one likes the offer.

May explained that it was because no matter what a person would still be signing on to a life that included disability and for obvious reasons no one wants anything to do with that.

I know I’m just going to have to find someone on Craigslist or something which is perfectly normal and I shouldn’t be scared but I’m absolutely terrified. I’m an only child and all my life I either only lived with my father or my mother so this is going to be really foreign to me. I’m also just scared, I only know relationships where you bide your time until you get so hurt you have to break ties and I’m not sure what sort of hurt I should expect with a complete stranger I’m living with; it could very well be a type of hurt that I haven’t experienced before and have no coping mechanisms for.

I think I kind of just snapped this weekend. I don’t want to sugarcoat things for anyone anymore and even though every time I’ve asked someone for help who has insisted that they would be there if I ever needed anything they immediately peace out. I’m just gonna take every offer given, I give up all pride or shame. I lost contact with a lot of friends like you because I don’t want to be a burden, I wanted to fix things and hit everyone back up when things back to normal but I know that’s not possible.

That first caretaker finally turned in all the paperwork she needed to and then was going to be paid by IHSS after receiving her timecard. I knew the check would probably be late and that this woman didn’t have a lot of money either so I paid her with my credit card for that week and then the next she texted me asking me to send her money.

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What I didn’t tell my friend was that when the caretaker didn’t arrive it was at the worst possible time. May was out of town, auntie L was out of state, mom couldn’t even use the phone anymore, and I’m not strong enough to work the buttons on my cell phone so I spent the day in bed unable to move or go to the bathroom but luckily May came home early and checked in on me.

The thing about the money gets even more complicated. The reimbursement won’t be sent out for what I paid the caretaker until the time sheets are signed by either me or my auntie but regardless of what happens the reimbursement will be sent to the caretaker. The one who abandoned me and has been dodging us. Do you think she will come over and give me those thousands of dollars I gave her? It doesn’t seem likely so I haven’t done anything but now it looks like the reimbursement might go through without my signature so she might be getting the money anyway.

Thank God a couple weeks after that IHSS finally came through with a new caretaker. She is loud as a motherfucker, manic as hell, and tries to multitask too much. Mom hates her. Every day they scream at each other. Mom sincerely and the caretaker in a kind of condescending joking manner.

I’m happy.

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She may be condescending, but she doesn’t belittle mom and she actually has experience with dementia. She is an amazing cook, this is the first time I’ve ever had a home-cooked meal that wasn’t like hot dogs at May’s parent’s place. She has torn the house apart deep cleaning everything because even though the place is tidy it’s dirty and it was beginning to smell. She cares about the well-being of mom even when mom is at her worst and has used her personal time to contact different government agencies to try to get more of our paperwork in order.

We still have no one to work nights which is why I’m here now. I usually don’t go to bed till around three but the last couple days it was like 7 o’clock in the morning when I went to bed. All the screaming kept me from sleeping in too late, though.

Oh, and look what the first caretaker sent me recently

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I literally have said nothing to her since my text back to her that I wasn’t paying her. I’m still not going to answer, let IHSS work it out.

She is upset because IHSS knows what she did and now they obviously won’t hire her. And the rest of this is kind of sad… The holiday food? Apparently her daughter had told her she was a narcissist and stood her up for Christmas so I invited her over even though I really didn’t plan on celebrating it (not in a bitter way, but a “not having Christmas is my Christmas gift” way) and she did bring something she had already cooked but everything else was provided by my mom’s church or me.

She told me that I needed new bed sheets so the next day she came in with sheets she said she got at Goodwill for $1. In return, she borrowed three of my shirts and obviously hasn’t returned them. It seems there are a few other things missing but that could just be mom throwing things out when no one’s looking.

She came in one night to help me into bed, I guess that’s what she’s referring to with the emergency help thing. She also came in at least an hour late every day and left at least a half-hour late every day.

She did bring in a few cartons of milk over that I’m surprised she didn’t mention but I guess she wasn’t going to try that seeing as how every day she ate two meals and snacks throughout the day all week long on my dime.

I’m really not even mad, I’m just exasperated.

This woman is self-destructing and the countdown seems to be going faster the more I ignore her messages. I just pity her, she keeps digging herself holes when she totally didn’t have to. If she had responded to me that night and said that she needed the money then I would have sent it to her, I would have borrowed it from May and sent it to her right then. Even after she left I left it up to IHSS and she was so suspicious of what I might do (maybe someone informed her how serious charges could be filed against her) that she would call and say things that would of course not get verified by me or any documentation and now she’s under all the scrutiny.

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